Update - Thanks to Oxycontin and my good Doctors and wise treatment plans

I guess I have been ignoring this blog. It is an uphill battle defending your treatment.

I have lost family and friends and I have become more isolated because of this.

Funny that the Tylenol, Advil and ignorance of some family and friends have caused me more damage physically and emotionally/psychologically than Oxycontin has.

I am happy to sa that with the use of Oxycontin I have been able to excercise enough so that I have not only lost weight, but the rebuilding of by core strength has allowed me to reduce my use of opiates! I no longer take Fentanyl in my pharmacological cocktail.

I did take a small increase of Oxycontin without the patch, I wake up in the mornings in great pain while I wait for the oxy to kick in. To overcome this I asked if I could take one IR (instant release) in the morning.

instead of risking a yo-yo effect and increasing my tolerance, my doctor gave me an extra small dose pill (10mg sustained release) and told me that if I break it in half I could chew it in the morning and wait for the pain to subside before I take my usual morning dose.

This is under strict orders that I chew 5mg ONLY if I am unable to tolerate the pain until my morning dose kicks in.

I tolerate the morning pain as much as I can, because I do not want to start a habit of breaking or chewing these pills. That is the start of a path I do not even want to start walking. However, It is nice to know that I have the option and I am also happy to return unused pills to the pharmacy when I get my refill.

My expectation I have set for myself is to keep working on m core strength and reduce the amount of oxy I take until it is a minimal dose.

I have added meditation into my routine, which has helped a great deal. Until I gave it a concerted try for a month did I realize how much my pain is aggravated by stress.

In summary. I have stopped taking Fentanyl, lost weight, have been meditating and exercising more (and more each month). I am even thinking of returning (very lightly and casually) to my Jeet Kune Do classes for stretching, strength and endurance.

However, I will have to consult with my Doctors first, and make sure my instructors are well aware of my condition.

All in all, thanks to Oxycontin I am getting my life back.

I believe that this medication, along with the others I take, and the monthly monitoring and regulating of my doctors have saved me lifeand given me back a quality of life that I never thought I would have again.

My best advice is to be open and honest about everything with our doctors. Bring your family in to meet the doctor and give permission for open dialog between your family and your doctor. If you have more than one doctor as I do, consent for them to share information and to discuss your case with eachother. Two PhD Brains are better than one.

And most importantly - Cede, resign yourself to your doctors decision. This does not mean that you should not discuss your own opinion or argue a treatment plan (in fact I began taking testosterone because I advocated for myself that opiates can reduce the levels of free testosterone in your body. After the bloodwork was done, I turned out to be correct). Doctors rely upon your feedback as they rely on results from bloodwork, or MRIs, CT scans and all the other info they have in your file. You feeedback is all part of a well informed Doctor that in tuens makes well informed decisions and treatment plans.

So talk to your Doctor, openly and honestly.

99.9999999% of the time, your Doctor knows best. So do what they say. Unless you think they are incompetent in which case you should not be seeing "that" doctor in the first place.

Assuming you have a good Doctor you trust and is well experienced, will listen AND give valuable consideration to your opinions, concerns, ideas and feedback - THEN CEDE TO YOUR DOCTORS DECISIONS.

Please post your stories and experiences both good and bad in my comments section. IF substantial, I will add it as a post to my blog under your authorship.

Update on Pain Management with Opiods

It's been a long time since my last post.
I am not sure if I even have an audience....
A lot has transformed since November of 2008.
My condition has, at best not improved nor has it degraded to any degree.

I am fortunate to have great doctors that in the region I live are willing to treat me wth Oxy. There is so much bad press about it that Doctors are almost afriad to write a script. And I can't blame them.

I have seem my share of people abusing it. And with the street price of Oxy exceeding that of gold by 28,000 times by weight, it is a cash machine for those who monetize their medication.

I know of many people that sell their scripts for income, but I have more friends and know of more people that use their medication as directed and are responsible with it, such as keeping it locked in a safe, disposing of any evidence, and not letting anyone know that you have a script.

One friend I knew let it slip to someone that he was getting a script. It may have been overheard or gossip may be the devil, but it was not long before the junkies swarmed around him, calling non stop trying to get him as a source.

Learning from this, if you are in treatment, tell no one with the exception of those who may be affected by it, such as your spouse, parents, other doctors, etc. By telling anyone else, you risk that it will only be a matter of time before every junkie has your number, and your refil date and are building a profile on you.

Therefore, secondly, change your refil date and time often, and if possible, change pharmacies once and a while. That way if you are being profiled, you have a less chance of being mugged after picking up your script. Or even better, get it delivered.

If you do have it delivered, count your pills. You cannot even trust the delivery driver.

Third, which is optional and recommended, cede... give in to your doctors advice. I have had many debates with my doctor about what I would prefer, and he takes it into fair consideration, but at the end of the appointment, I do what he says.

Fourth, it will take time to find your best dosage and schedule. For me it has been over two years, and my doctor has allowed me to self regulate within a minimum and maximum dosage. This liberty was a gift, and I have found that there are days I can go without, and days that I cannot. In experimenting I have found a combination of dosage and schedule combined with suppplimentary advil and clonazepam that I can be closer to the minimal dosage range.

This trust with my doctor to self regulate took over two years of monthly appointments and drug screening to gain his trust and confidence that I am not abusing. And I am now considered a low risk....
.... A brief history so that last part is clear:
You see, I was self medicating with many and anything I could during the early years of my "moderate to severe" pain stages, so when I first saw my doctor, he told me straight up that no doctor would perscribe me Oxy or any narcotic since it appeared that I was abusing several substances already including oxy.

The fact was I was desarate and taking matters into my own hands to find relief, and break, even for a few hours from the pain.

I was getting no where with my previous doctor, whose advice was to take advil. But advil at 3000+mg/day minimum can damage your body in countless ways. It is not meant for long term high dosage use. I was also taking the same in tylenol with alcohol to put myself to sleep 6 to 12 bottles of beeer and a bottle of wine, maybe two. But in pain, when you live in century hours, desparate times called for desparate actions and at the time, I was reaching the point of considering suicide for fear of a lifetime with pain. I would have killed myself if I had to live the rest of my life like that. And my doctor understood that. He saw me as not high risk for abuse, but risk for my safety in buying on the street and financial risk at the cost on the street. He also saw how low I had become and the depression.

So I was high risk to other doctors, but to my pain management doctor, I was high risk to myself and my welfare.

Onto the point... once on a perscribed dosage and following my doctors advice, all my habits changed, almost overnight. I stopped drinking heavy, stopped the advil/tylenol abuse and in the year that followed I lost 40 pounds of fat, which I suspect was due to the 12 beers a night before bed.

I am now classed as low risk and do not have to take the drug screening anymore. And my doctor takes my feedback under due consideration.

However, unknown at the time, treatment is where the biggest challenge came in. I was a recreational user of many types of substances. I won't deny. And taking Oxy in a way forced me into sobriety since I could not drink heavy, or risk interactions with other drugs.

Some time ago, I did not know it at the time, but after two to three years, I have not returned to any of my previous drugs, and my drinking is only occasional at family dinners, or a cold beer with my Dad.

I will talk about gettting sober by taking narcotics in another post. But that is what essentially happened. I accepted that in my past, I was a user and abuser, and that taking Oxy brought me to a clean and sober lifestyle.

But I had no basis for coping getting sober since I, and almost all my friends, since the young age of 12 years old, experimented and used a wide variety of drugs and booze.

Much of the fustration and change over the years I have come to realize has been a form of becoming clean and sober.

In the end, I endured what was about 5 years of high stress and pain due to all the internal and external factors. I am now in therapy and see two therapists. One spiritual and the other more clinical. And with their help I am now starting to recover from what I term a Traumatic Stress Anxiety Disorder due to a very prolonged period of extreme stress and pain, during which I had little to no relief.

I have officially taken sick leave and for the first time in a long time I am resting. I am working to develop proper eating and sleeping patterns, as well as meditation to be more "in the moment" as opposed to always stressing about and worrying about events and consequences weeks or months away, even stressing about events years from now that may or may not ever happen.

Not to say that I have stopped setting goals and long term plans, I am just trying not to worry about the things that could go wrong next month, and focus on the tasks and challenges of today, and maybe tomorrow, with a appreciation of the overall big picture.

For me this has been a long journey and my only regret is that I did not blog enough, especially through the hard times.

Regret aside, tonight I am doing OK. and tomorrow, looks like it might be OK too. In fact yesterday I spent my first stress free day since 2004. I realized this when I found myself at the piano, which I have not been withing 6 feet of for,... well, years.

When I realized last night that I was reading, I had played the piano for MY pleasure, and was writing some flash fiction, it hit me that I was finally feeling OK.

Even for just a day, I felt good in spirit, body and mind.

One day was enough of a taste to give me strength until the next Good day. And as I get ready for bed, I realize that today was good too. Two good days in a row, where I would have at best hoped for a good hour or two.

I'm more confident that am on the right path and I am recovering. Slowly, but surely, I am finding myself again. The "self" that I am happy being and the "self" that those who are close to me are happy being with.

In closing I'd like to say somethng I never thought I would hear myself say - "I am looking forward to tomorrow."

And whoever you are, whereever you are, whatever your condition is in body, mind or spirit, if you are breathing, then there is more right with you then there is wrong.

Believe.
And goodnight.
I will see you tomorrow.

WEAKNESS I FELT NOT BEING ABLE TO DEAL WITH THE PAIN ON MY OWN - alone strong

"please give me some advice the pain i feel is excruciating and has taken my ability to live as intended away and i am at the end of my rope................" 

WEAKNESS I FELT NOT BEING ABLE TO DEAL WITH THE PAIN ON MY OWN

----------------------------------------------------------

Weakness.... i dunno.

on my own. yes.

It will wear you down. It wore me down. I can handle a large amount of pain all at once. but the steady drip of chronic pain is torture.

How long is someone supposed to endure a daily life of pain? 

Lets add measured perspective to this 

We will live to be 70, 80, 90, 100+. 

At least 35 years for me to go. 

35 years with 12 months in each year.

12 months with each having 30/31 days

Each years has 365 days. 12775 days is 35 years

ONE month has 30 days. one day has 24 hours. 60 seconds in the hour.

1 mississippi 2 mississippi 3 mississippi 4 mississippi 5 mississippi 

that was five seconds... 5 seconds of being in pain.

60 seconds x 60 minutes x 24 hours x 30 days x 12 months x 35 years

well that is about 1,088,640,000

over a billion of 1 mississippi

I do not think that I would call it weakness to NOT want to be in pain for one billion eighty-eight million six hundred forty thousand mississippi's

It is not a flaw in character or spirit. I do not know of anyone ever and I cannot imagine anyone who would want to endure any level of discomfort for that many mississippis. 

So weak is the last thing I would refer to you or myself or anyone who has chronic pain.

Quite the opposite. The strength you have had to have to endure it so far and to not be a complete mess. The fact that you  are (or I am) still standing, albeit a little hunched over and leaning on the counter, with a good majority of your marbles in your pocket still shows just how strong your character and spirit is.

ON MY OWN....

Aversion to negative stimuli is the second most  powerful motivator. Only the "mothers love" is stronger as demonstrated on countless lab mice and electricity. So it is not surprising that people do not want to empathize with pain. It does not become real to them because they will not willing to take the pain themselves. So yes, dealing with the pain will be a thing that is solitary, but dealing with it can include the use of opiates. 

Remember that it is by a doctors prescription and supervision. So alone you can deal with it, but you can get help dealing with it with the oxy so that while you are dealing with it, you can enjoy a quality of life that we are all entitled to as set forth by our forefathers and one of the reasons why we live in the countries that we do.

And in taking the pills, there is no weakness.

I invite anyone to show me one person in history that was willing to and did so happily take a literal measured lifetime of slow torture without cause.

Ya to the oxy

As for going without the meds, would you not take your heart medication if you had a heart condition? Would you not take synthroid if you had an underactive thyroid? If you had seisures, would you not take seizure medication to prevent them? 

So why would we not take medication that is designed for chronic pain if we have pain that last the rest of our lives?

Take the pill. Enjoy your life. Follow your doctors advise.

ability to live as intended - educating friends and family on chronic pain and the use of oxycontin and other opiods

"please give me some advice the pain i feel is excruciating and has taken my ability to live as intended away and i am at the end of my rope................"

----------------------------------------------------------

Ok. Shit happens, right? And pain sucks. But the medication works. Take it. You covered a lot of ground in your comment and I want to be able to comment on every one of your points and thoughts. 

But to start, if the friends that are opinionated are worth keeping, then take the time to educate them about it. Tell them about your condition and be honest about what it is like to be in pain. If it is someone who you are not too concerned about, fuk them. Seriously - they are not worth it and they will never care enough to empathize with your pain to really appreciate the treatment and its benefits. 

But the trick is in getting someone to understand what chronic pain is before they can understand the treatment.

I explained to a good and concerned friend one day... I said: 

"imagine having a really bad headache right now. A steady painful headache, like the ones you get from a hangover after drinking sweet white wine. The headache that moves with your body and thumps with your pulse and is in the forethought of everything and every second.

Keep that headache all day - thru your entire work day, with all the things you do at work and all the people you need to interact with - and then drive home with the headache, still thumping and aching. Have supper with it, spend time with your wife while having the headache, then go to bed with the headache. Sleep with the headache.

That is one day.

Then try to imagine that hangover headache being there to wake you up in the morning. Shower with it, have breakfast with it and go thru another day with it - work, lunch, work, home, supper, wife, kids, sleep – all 24 hours with the same damn headache. Sleep with the headache. 

Then do that for a third day, all day and all night.

Then do that for each and every day of the week including the weekend. 

After a full week with a nonstop really bad hangover headache, imagine how irritable you would be, how out of focus. Then keep the headache for another 7 days of work and weekend.

Then do that all over again for another week, and then another, with Saturady and Sunday, evenings included, and all thru your sleep with the same headache. 

After one month of a really bad headache, start the second month with the same headache, but maybe a little worse and shifted over a bit. And go thru each day of each week of the second month. 

It is easy to paraphrase it and just say “week” or “month”, and to make time pass, but with pain there is no jump ahead. Each hour passes on its own.  Each day you have to work and look after your responsibilities. Each day has 24 hours that have 60 minutes that have 60 seconds that pass like 1 mississippi 2 mississippi 3 mississippi 4 mississippi 5 mississippi 6 mississippi 7 mississippi 8 mississippi 9 mississippi 10 mississippi … each damn second passes in its own space of time. 

Keep the pain of the headache for another 30 days - 30 days with 24 hours in each day and 60 minutes in each hour and 60 seconds in each minute with the headache thumping with your pulse and banging with your movements. – 1 mississippi 2 mississippi…

Then do it all again for another 30 days (1 mississippi)... take the headache for 60 days. Take it 90 and then 120 days non-stop with a real bad hangover headache.

Imagine your doctor telling you that you will always have the headache. Forever. It will always be there for every waking moment.

It will never go away. 

At a point you realize that it just plain hurts a lot, all of the time. And that you are miserable, depressed. 

All you want is some time without the headache - an hour, minute or even a few seconds were there is no headache. Just a few seconds to feel normal."

Then I asked him to just take a few minutes to imagine everything he today and then in the last week, and add a headache to everything he did. 

“Now take a pill and it is all gone. Gone. No pain.”

He seemed to understand at that point. 

He could understand a bad headache and he could understand time. But he could not understand chronic pain until I did the math for him.

Second Guessing

I have a thyroid condition. I take one pill a day, and there are times when the days and weeks blur and I forget to take my pill, sometimes for days on end.

I can usually tell when I have gone a few days without my thyroid pills. My mood changes, I get depressed. I get tired and my limbs feel heavy weighted. I get a numbness like a warm burning in my jaw and behind my eyes and I generally feel like crap.

With a lightbulb above my head, I eventually realize that I have forgotten to take my pill and that my thyroid levels are low. So I double up my dosage, have a good nights sleep, and usually the next day I start to return to normal.

When I take my thyroid pills daily, I am unaware of how dependent I have become on them. When I feel fine, I do not appreciate how effective they are in normalizing me, and it is only when I an not taking them, that I do realize how much I need them and how well they work.

So lately I have been enjoying a relatively pain free life. I would say 80% pain free with low to medium activity. In fact, I have been feeling "ok" so much so that I have begun to forget how horrible I feel when I do not take my opiates.

So now that I am feeling better I am wondering if this medication is necessary. This is how I think I should normally feel as far as daily pain and discomfort. And I wonder how I would feel if I stopped taking my oxy.

So I did jsut that - I skipped a couple pills today. And WOW! as hours go by, the pain is starting to come back. And what a reminder it is!

How did I cope with this pain before? Was it always this bad? Do I have less a tolerance for the pain? Or has my condition continued to deteriorate,? And I unaware of the continued damage due to my blocked pain receptors? Maybe I had become accustom to the pain before the meds and now that I have spent some time without pain, I do not have the tolerance, or natural pain inhibitors to cope with the pain?

As the pain comes back, I appreciate why I take these pills and how effective they really are. And I guess one of the reasons I am writing this blog is to remind me of the reasons why I take the pills. To remind me of where I have been, and what it was like before.

Save the second guessing for another day.

Friends with Tunnel Vision

I was at a small gathering with a healthy cross section of friends. It had become known in my circles that I was suffering back pain, and that I was undergoing several tests and scans so as to offer a diagnosis.

At the time that I began the MRI's and X-Rays and blood work, etc.. my condition had gone from something that I could cope with to a steady degenerating condition leaving me with moderate pain constantly, and if I was in any way active, severe pain.

It took almost two years to get all my scans done and to finally get in to see a neurosurgeon, who had drawn the conclusion that surgery at this point would not benefit a degenerative condition and that it would be better to consider cutting me open when when I am older. Essentially, I was too young to do such an operation, when there is a chance that the condition may either get better or worse as I age.

During these two years, my family doc would not proceed with any treatment until the final word came back from the Neurosurgeon.

Two years is a long time to wait. Especially when you are in pain.

In this position, I had two choices:
1) endure the pain, and try to manage it as best I could, including physio and a pain management program they have running at the local hospital.
2) self medicate

I guess what prompted me to begin self medicating was waking up in the mornings. Every day and night I found myself in a frustrating paradox: on one hand I was exhausted because I could not sleep comfortably. I could not lie down for any length of time, and I had began sleeping in a Lazyboy, on the couch or at my desk with my head on the keyboard. And on the other hand, if I did sleep, I would wake with such excruciating pain - what is best described as a "zipper of pain"© running down my back - that I would spend the first hour or two of each day holding my ribs and back, while I rocked back and forth crying.

A headache I could bear. And I have sprained my ankle a few times in the past. That I could suffer through as well. But everyday pain, all over the body, day in day out, in the middle of the night and the middle of the day... after a few weeks of this, I was miserable. After a few months, I had lost myself. When years had past, I was no more. I looked basically the same, but so much was taken from my heart, spirit, soul that I was all but left with a fleshy shell encasing a mass of discomfort and hurt.

So back to the party, one of my friends saw me taking a perc. and a little while later an oxy. It was known amongst my friends that I was taking them but when one young lady saw me first hand eating some pills, I was chastised!

She went off on me with a lecture from hell about all the abuse stories she heard and the experiences she had first hand watching old friends throw their lives away with this drug.

Bear in mind that while she is going on and on, she was not only drunk as fuk, but smoking joint after joint, eyes red, words slurred and emotional.

Now it is not that I don't mind listening to someones opinion and general concern for my welfare, but to add to the hypocritical fact that she was drunk and high herself, she would not listen to my reasoning behind my self medicating.

What I tried to tell her was this...
Yes, some, if not many people buy this drug illegally. And it is well abused. In my past life buying them on the street, I saw what it rendered people to. I have seen an "Oxy Den"© and saw how sick people got when they ran out.

But she was completely ignorant to the benefits of the drug in the treatment of chronic pain. And until one is able to experience chronic pain, there is no way to appreciate the lengths someone will go to, for even just a few hours of relief.

Imagine waking up in the morning with an unbearable headache. A headache that went from the top of your head, through your neck, down your back, across your ribs, and then into your hips, buttocks and legs. And imagine that the headaches is so powerful that all you can do is hold your self and cry.

Then imagine that the headache lasts past the morning, and into the afternoon. Imagine going to work with it, and then coming home. Going to bed with it and then waking up the next day with the headache still there, flucuating in waves of intensity.

Imagine how it would be for that 24 hour period - how it would affect your work for that day, your relationships, your interactions with others, your moods, your sex drive, and every aspect of your life throughout that 24 hours. You would maybe be inclined to call in sick to work. Of cancel an RSVP to a dinner party.

Then imagine that headache stays with you through a second day. Just as bad, maybe a bit worse. Imagine that no position, hot bath, massage or anything helps, and there is nothing you can do but live with it.

And at the end of the two days, imagine that you wake up at the beginning of the third day, hopeful to get back to normal only to find the headache is still there. It stay for the rest of the third day until you finally fall asleep.

Wait....

wait....

take a breath.

let some time pass...

wait.

Now you wake up... and instead of your wife greeting you with a "good-morning"....
your head splits open with agony and you realize that

this

is

going

to

a very

long

and painful

day... again.


Week Two begins. Then the third week - every morning waking up to severe pain, spending the day with it and going to bed with it. Pain pain pain.

Then do it all again for the second month, then a third month. Then each and every day for four months, then five months. Each and everyday with no relief for six, seven, eight, nine months and all the way up to a year.

Constant pain for so long, systematically dismantles your life and turns you into a bitter, grumpy old man. Over time, it wears you thin. You spend more time trying to cope with the pain, and less time living your life. You stop being active socially and stop going to dinner with the family on Sunday. You have to leave your job, and you are unable to make love to your wife. Each day a part of your life is taken away. Each day you lose a part of who you once were until all you are and all you have is the pain.

....

I reached a breaking point. The doctors were not able to figure out what exactly what is the cause of my condition. Sure I had the bad discs, and the sciatica, and the spinal stenosis, but these did not add up for me, and as a diagnosis of last resort, the doctors called me fibromyalgia and gave up.

The best I got for the pain was Tramadol and some anti-inflamms. Tramadol was as good as Smarties for me, and they formed a part, of a sometimes bi-hourly cocktail that I would take. The cocktail also included T1's and Robax, Advil, industrial sized ibuprofen 600mg and a very generous helping of red wine and/or beer.

Again, back to the party, her she was, oh so pain free, telling me how Oxy will destroy my life and all I could do was laugh at her, because the one thing she did not realize is that my life was already destroyed. I was taken away from me day by day, hour by hour over the course of two years.

In a way she was simply a concerned friend. But she was not concerned about me when I was in pain. She was only concerned when I was feeling better, and the risk I was taking in order to feel better.

Her inability or unwillingness to see beyond the fact that I was taking opiates, to the reasons why I was taking them left her with tunnel vision.